Hi! I'm new :) I'll just get down to it. According to what I've read, my positive nucleolar ana means diffuse scleroderma. The reason I got tested a few months ago was I developed a terrible headache for weeks, swollen lymph in neck, aching joints, full body hives and fatigue. I've never had Raynauds (that I know of) though my hands swell every so often. I've felt great the last month or 2, no symptoms. Waiting to see a rheumatologist. Just wanted to see what more people thought of this. Also, I had a false positive syphillis test 2 years ago which apparently has links to lupus. Does that ana ever happen and it's not scleroderma? Is there anything I should do between now and my far away rheumatology appointment! Thanks so much in advance!!
Do I have scleroderma?
Posted 30 December 2013 - 11:29 PM
Welcome to these forums!!
I'm sorry to hear that you've had health worries; I would emphasise, however, that a positive ANA does not necessarily mean that you will go on to develop full blown Scleroderma, or any other autoimmune disease. The opposite is also true, ie it's very possible to have Diffuse Scleroderma, but have negative blood work, as many of our members can testify. A diagnosis of Scleroderma or other autoimmune diseases should be made on clinical symptoms, as well as blood test results, as they are not conclusive.
I've included a link to our medical page on Antibodies to give you some more information, but I would suggest that you try not to worry too much (easier said than done, I know! ;) ) until you are able to see your rheumatologist who may instigate further tests and examinations and hopefully a clearer picture will emerge.
Please do update us when you've had your appointment.
ISN Assistant Webmaster
SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager
ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)
Posted 01 January 2014 - 01:35 PM
I understand your worry and hope it will all be for nothing. ANA panels are very confusing and best left to the specialist to interpret.
As far as what you can do, start to keep a journal of your symptoms and if you have a visual symptom take a photo of it as the rash, bump, redness, etc. may not be there when you have your appointment. For instance, you might note your hands were swollen one day but then realize you were eating a lot of salt the day before, or your hands might not be swollen the day of your appointment.
Take note of skin changes, swelling, pain, gastrointestinal issues, fatigue and anything else out of the ordinary and jot them down. Please keep us updated on your progress and if you have any other questions, just ask!
Posted 06 January 2014 - 03:18 PM
Welcome and yes you can have positive blood work but never develop any symptoms and vice versa, I'm one of the vice versa's as I have diffuse scleroderma but negative blood work. See the video titled "Diagnosis of Scleroderma" which covers this point. You may also be interested in the one titled "Difficult Diagnosis" and "Symptoms of Scleroderma".
Should you be in the position that you really suspect scleroderma then you will want referral to a scleroderma expert, you can find the link to their list on our home page. As scleroderma is such a complex disease, the blood work issue shows this, it's important that an expert give a diagnosis or rule one out. Some non experts will dismiss the possibility of scleroderma based solely on blood work irrespective of symptoms. We have a member on these forums who has sclerodactyly but negative blood work and consequently was told she had another disease, see video "Sclerodactyly", this is when the hands become hard from fibrosis and curl into the classic clawed position and is a well known symptom of scleroderma. Needless to say a correct diagnosis was eventually given.
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)